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Of Time and the River

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Next weekend, the waters of the Schuylkill River will be transformed into a river of hope for children and families dealing with the heartbreak of Familial Dysautonomia, a rare Jewish genetic disease that affects the sensory and automatic nervous systems.

Two teams of more than 40 people from Old York Road Temple-Beth Am in Abington will take part for the first time in the eighth annual Philadelphia International Dragon Boat Festival.

The teams, Hope United and Hope United II, whose members donated $118 each -- nearly $5,000 -- will compete in the narrow, 40-foot-long fiberglass boats to further F.D. research and especially on behalf of Sam, the infant son of Rabbi Lawrence Sernovitz of Beth Am and his wife, Rebecca.

Sam, 1, whom his father calls a "dynamic little guy," was diagnosed with F.D. when he was 4 months old, and is only the 637th known F.D. case in the world.

Said the rabbi: "I was blown away, overwhelmed when I heard about the two boats because of the compassion and care shown by the Beth Am congregation for Sam, Rebecca and me. As a family going through a crisis, this is just what we needed. The support has been wonderful," said Sernovitz, who will be in one of the boats, along with his father and brother.

It all began, he continued, with a letter he wrote to Beth Am's 900 families about Sam's condition, immediately after the little boy's diagnosis this past January. That's when two women from the congregation, Peggy Robertson and Alison Dryer, put their organizing oars in the water, so to speak.

Dryer suggested a dragon boat as a way to raise money.

Together, she and Robertson, who had taken part in last year's races, launched the effort to recruit members from among the congregation for the team. The response was so strong that soon, they had two full boats.

This year's festival will have 152 teams (about 4,000 paddlers), the maximum allowable, said Carol Lee Lindner, founder and director of the Dragon Boat Festival.

Dragon-boat racing began in China 2,000 years ago. It made its first appearance in the West about 20 years ago.

In addition to money contributed by crew members, registration fees of $1,500 for each of the two Beth Am boats and $250 for two tents was paid anonymously. Funds raised will go to the Dysautonomia Foundation, Inc., of New York City, which funds the Dysautonomia Center at New York University Medical Center.

But thanks to ongoing research, which has struck upon successful therapies and surgeries, more than 50 percent of children diagnosed with F.D. can now live to age 30.

In 2001, Dr. Felicia B. Axelrod of NYU identified the F.D. gene; NYU is set to begin testing a gene therapy of splicing the gene together on adults with the disease that could relieve its symptoms.

"The involvement of our congregation in the races is about Jewish people here and elsewhere coming together to support their own community. The importance of Jewish unity will be my message for the High Holidays," said Sernovitz.

While the race takes place on Oct. 3 -- Shabbat -- Sernovitz said he was given permission to participate by Rabbi Robert Lieb, Beth Am's senior rabbi.